XMRV International Advocacy Strategy: Help us start a Facebook page?

XMRV International Advocacy Strategy
Some of us have been discussing the opportunity and urgency for the ME/CFS community to join forces with other patient groups internationally to get action on XMRV. The thinking is that - by the very nature of ME/CFS - we are indeed limited in terms of what advocacy we can do. That said, we share a common purpose with other groups affected by XMRV (eg. prostate cancer, autism Gulf War Illness) - even if there might be subtle genetic differences in the virus across diseases and/or countries. What we DO know is that XMRV replicates relatively slowly, and hence for the most part we are dealing with a relatively (genetically) stable virus. And we are all crying out for XMRV diagnostics and safe, effective treatment. Together, we could be powerful. (See our discussion on the Gulf War ME/CFS thread @ http://www.forums.aboutmecfs.org/showthread.php?t=1850&page=2 )

A suggestion was made that we start up a Facebook page as an international XMRV advocacy hub, and then break that down into separate countries. That way, say, Canadian XMRV advocates from prostate cancer, cervical cancer, autism, and Gulf War Illness (to name just a few) could join forces to make change for Canadian patients. Other countries could learn from best practices, and thereby accelerate XMRV care in their country.

This is where we need your help:

Firstly, what do you think of this idea?

Can someone set up an XMRV International Advocacy Strategy page on Facebook for us? (I have no clue how!). Can this be split into countries? Can you folks suggest a better name for it that every one will "get"?

I've done a Straw-Man outline of what could be on the intro for this Facebook page. (This would still need to be further edited so it speaks to ALL patient groups.) Comments? Edits? Other?

Straw-Man: First draft of an open invite re: XRMV International Advocacy Strategy

A New Day for Neuro-Immune Diseases and Cancer
October 8th heralded a new era for patients with Neuro-Immune Diseases and cancer with the publication in the prestigious journal Science of a stunning link between Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and the retrovirus XMRV. The astonishingly nimble Whittemore Peterson Institute for Neuro-Immune Disease - on a shoestring budget - cobbled together an illustrious Whos Who of researchers to achieve this groundbreaking find: The Cleveland Clinic, and the National Cancer Institute. The newswires exploded with the news: New York Times; Wall Street Journal; LA Times; Reuters; MSNBC to name just a few. The U.S. Department of Health & Human Services formed an interagency Blood XMRV Scientific Research Working Group on XMRV, collaborating with multiple agencies including the National Heart, Lung and Blood Institute and their Retrovirus Epidemiology Donor Study (REDS). A three-stage approach was announced addressing standardization of XMRV testing; determination of the prevalence of XMRV; and research on XMRV impacts. Now we wait for an imminent announcement on whether our blood supplies have been contaminated by a cancer-causing retrovirus: XMRV.

The pace of uptake of this research has been astonishing. Retrovirologists around the world have initiated dozens of research projects to explore XMRV and its relation to disease: prostate cancer; Gulf War Illness; cervical cancer; autism; atypical MS; Niemann-Pick type C Alzheimers to name just a few. In November, the renowned Cleveland Clinic convened 75 prominent retrovirology researchers to discuss XMRV research. Internationally, 70 Spanish specialists convened in Madrid to discuss their National Retrovirus Registry and the implications of the XMRV discovery.

Accelerating availability of XMRV testing, research, and care
Many ME/CFS patients have had this devastating NeuroImmune disease for 10, 20, even 30 years and more. Weve lost friends, family, careers, hobbies our lives. XMRV diagnostics and treatment cant come soon enough. HOW can we accelerate adoption of XMRV science? How can we rapidly infuse our respective governments with a sense of urgency on this issue?

Finding our Voice
Perhaps the #1 thing ME/CFS patients can do is to find our voice. We need to develop a coherent message and effective public relations strategy that demands swift and decisive redress for these decades of medical neglect. Many patients are home or bed-bound, and have lost their support systems. Few of us are healthy enough to become vigorously involved in advocacy other than through our online efforts. Our ME/CFS patient organizations are often supported by volunteer patients who also have limited capacity to advocate for our cause. But we are not alone.

Other patient groups
With one astonishing research publication, the Whittemore Peterson Institute has super-sized our patient community to include other potential XMRV-affected Neuro-Immune diseases (in alphabetical order):

Autism

Atypical MS

Cervical Cancer

Gulf War Illness

Irritable Bowel Syndrome

Lyme Disease

Multiple Chemical Sensitivity

Niemann-Pick Type C Alzheimers

Prostate Cancer

Strength in numbers
Together, these patient organizations represent a powerful lobby for swift XMRV diagnosis and care. We can help them. And they can help us.

In the U.S., ME/CFS is still considered an Orphan Disease, and patients may therefore benefit from Orphan Drug legislation which can enable biotechnical research, and speedy access to therapeutics. But regardless of our particular Neuro-Immune disease, or our country, we all share a common need for SPEED. For many of us, decades of our lives have been lost to medical neglect. XMRV must be raised high on the political radar in each of our countries. Together, we can do this.

An Invitation to Join Forces
This is an invitation for us to join our voices, and to fight with a common purpose. This is not meant to supplant the efforts of our individual patient organizations. We need them to further our unique needs. But this proposal is that we join forces in our areas of XMRV crossover. Specifically, we share the same urgency for:

Credible XMRV diagnostics;

Fast-tracked research on XMRV;

Access to clinical trials for XMRV therapeutics; and

Access to safe, effective therapeutics as they become available.

International Best Practices
An international discussion forum, website, and Facebook page could allow diverse patient groups potentially affected by XMRV to join forces and then to exert powerful influence together, on their respective national governments, research institutions, and private sector. A central, global hub could serve to share international best practices in XMRV advocacy, so that others might leap-frog their efforts. In this way for example, XMRV advocates in France could share with their government that Spain has a National Retrovirus Registry, and has already had a meeting of the top retrovirologists, addressing XMRV. Advocates in Canada could point to the U.S. meeting of 75 retrovirologists on XMRV, and demand similar action in Canada. Gulf War Illness veterans from the UK could learn of political fast-tracking to address this issue in the U.S. Templates could be provided on the international sharing site, such as letters of invitation to prostate cancer advocacy groups; strategy pointers for dealing with the media; success stories, etc.

National Advocacy
Each national page could provide specific links and contacts for the key patient organizations potentially affected by XMRV in that country. For example the National Page for Canada might have contacts for:

3 national and 6 regional Autism groups;

2 national Atypical MS groups;

etc, etc.

The same Canada page might include a position statement (say, one paragraph) from each of the diverse patient groups. It could include a list of the retrovirologists in Canada, and provide a listing of HIV/AIDS clinics across the country, that are accepting XMRV patients. And so on...

A To-Do list could be created for each country, identifying areas in which patient advocates could contribute. Letters to the media. Invitations to patient organizations to join forces.

Keeping it SimpleBottom line, if we build critical mass stick together - within the XMRV patient community, we could do great things quickly. We could ensure that successes in one country are swiftly shared with other countries - for the betterment of all XMRV patients.The key would be to identify the areas in which we share a common purpose and to stick to, and collaborate on those. Again, we dont want to re-invent the wheel. But we sure could use some turbo-boost to make XMRV diagnosis and treatment a reality SOON. Together, we might just do this.

Yay parvo! Rock on! Thanks for all your hard work. I can't absorb all the text right now, but I wanted to volunteer to start the Facebook group page, once we figure out what we want it to say. And as far as names go, I'd vote for "XMRV Action Network".

I sent an invitation to about 150 of my friends in regards to awareness, so far I have only 9 responses!

We know ME/CFS is a curious condition. Two years ago I was misdiagnosed with bowel disease. I had no knowledge of ME and didnt know how serious it is and was oblivious to the lack of knowledge the ordinary man (and medical professionals) had on the subject.

I really believe that unless you suffer from ME, or know someone who suffers severely, the ordinary man wont care. It is an unfortunate truth. Someone said on another forum, that there is no proof or knowledge that people drop dead of ME/CFS (although I now know this isnt entirely true). So, the general public arent afraid of it, for themselves or their families.

We have to get across the fact, that even a moderate sufferer can loose their livelihoods and social lives. And even the people that manage to work, can only do so with tremendous amounts of rest in between and very little time for anything else.

My husband and I are setting up a cause for facebook and need ideas for the following.

1 Cause name: XMRV International Advocacy Alliance?

2 Mission statement: A one sentence statement on why this cause exists and what you hope to accomplish.

3 Up to five position statements such as core beleifs, key facts/statistics or major goals. Each position statement can be no longer than 150 characters.

We can also include links to other websites for more information.

WE NEED THE LOGO!

Also we need a domain name for the website.

Also, my husband will set up a web page but will need to be a group effort. Start think about what you want on it and I can just cut and paste your ideas onto the site.

Parvo, I think we can use much of what you wrote on the website but the facebook cause needs to be short and to the point. We are learning as we go and am still unsure about how to organize it in the way you described. We need to get it up and then we can post links to other sites such as GWI, Autism, this group, ect.

Even more with the way ME/CFS is marginalised. So many non ME sufferers must get caught up in the net with real PWME.
And if XMRV turns out to be the cause of ME, but not other conditions, or of some illnesses but not ME, there's a danger the psych lobby will try to divide, and conquer whatever they can still get a grip on (or at least keep hold of some of their 'territory').

We need to get the biggest group possible, and then keep it fighting for the whole group, whatever happens.

Perhaps add Orthostatic Intolerance / Dysautonomia to the list of patient groups. There are many ppl out there will this diagnosis rather than CFS although many of the symptoms are similar. After reading the Clinical Case Definition for CFS, It would seem that these 2 are related.

With only a few minutes of thought here (needs to percolate in the ole' brain a little more), I'm not entirely confortable with *advocacy* in the name....really kinda like fresh eyes idea XMRV Action Network, but wondering about XMRV International Action Network. I don't have the energy at the moment to explain my rationale - but that's my immediate thought for what it's worth.

I like the umbrella. I think we have to decide what our goal is here. I think many of these groups have no idea that their disease could be so closely connected with another. I would like to have a place where people can come and say, Wow! I never knew that CFS and Autism might be connected. Once people see that connection then they can start to understand how XMRV could affect them and it is not just a CFS issue.

Should we make the mission the connection between these diseases in order to bring these groups together? Then we can focus on XMRV diagnosis and treatment for all these groups? I am afraid the XMRV title might discourage some from checking out the facebook or website. However, if the main focus was the connection between these diseases it might bring more people in.

Yay parvo! Rock on! Thanks for all your hard work. I can't absorb all the text right now, but I wanted to volunteer to start the Facebook group page, once we figure out what we want it to say. And as far as names go, I'd vote for "XMRV Action Network".

Sorry, I totally missed your post. If I had known you volunteered I certainly would not have stood in your way. If you have the energy to do it then my husband and I will do the website.

Click to expand...

Not *at all* - I'm thrilled! And I have plenty on my plate right now. I totally appreciate you guys doing it.

ETA I agree that a good mission is to bring awareness to the possible connection between all these diseases and XMRV, and to advocate for urgent XMRV research. We can bring people's attention to it by commenting on *their* Facebook pages (autism groups, etc.), with a link to ours. Perhaps we could even get other groups to officially "join" the Network.

In the future, maybe we could make a related page around the broader topic of "unexplained illness," which is an important topic too - that "uncertain pathogenesis" does not equal "all in your head". But I think for now we should just stick to "XMRV might be causing your unexplained illness."

For the name - I like either xmrv action international or xmrv action global or xmrv global action (would that be pronounced zag?)

I love the idea of getting other diseases on board asap. I wonder about having a person or few who are interested in one of the other diseases be a spokesperson for our group who would be the liaison person/group to approach organizations for the other disease and see about getting them involved as well.

A very small point, think that prostate cancer should be 1st in any list of related diseases - xmrv found there 1st + a men's disease + fatal, think all catch attention

What do you think about talking to existing ME/CFS groups to see if they're interested in participating, if they have contacts.......

However I'm afraid to take this out of main stream to a Social Group because people are not as likely to see the ongoing and fast moving action and jump on board. Also new people may not find it right away. I like keeping it front and center all the time......Just my 2 cents.....